Among those works is the Citizen Leadership – Co-creating Integrated Care Study undertaken by an international group of researchers working with an international group of contributors; contributors of whom I am one. Galvanised by an observation by the World Health Organisation (WHO) et al:
The World Health Organisation and other leading bodies recommend that to better integrate care, people with lived experience of such services should be central to the strategic planning and delivery of health and social care systems.
Despite this guidance, and general acceptance of its ethical basis and practical benefits, research highlights that people with such lived experience are rarely involved in such strategic developments. If they are able to contribute, this is often as an after-thought with little meaningful influence on the key decisions and investments.
The reasons for this are many – a lack of understanding by partnerships about what support needs to be in place, a wariness of getting it wrong and therefore not opening up such opportunities, professionals not fully recognising the important insights that can be provided, and no established paths for people with lived experience to take on such roles.
The researchers set about recruiting contributors from as far afield as Australasia, the Americas and Europe. Over a period in excess of 12 months the contributors were interviewed to offer insights into the concept of citizen leaders and their engagement within their own countries and then brought together in two focus groups to discuss the findings, implications and, traditionally, next steps.
A report (pp44) has been produced and the full text can be accessed by clicking Citizen Leadership and Integrated Care Report (warwick.ac.uk)
The next steps include further collaborative working to develop learning and other resources to increase engagement and involvement – to share insights, engender and foster discussion, to develop networks and relationships such that the WHO comment of “despite this guidance, and general acceptance of its ethical basis and practical benefits, research highlights that people with such lived experience are rarely involved…” is a thing of the past and that listening to the patient voice, embracing lived experience partnerships and true co-creation and co-production is standard practice throughout the world.
For those who have read my blogs previously and/or know me personally, when invited to contribute further it took no time at all to accept the privileged invitation. Similarly, you may be aware of my mantra – that of a patient: “If we knew more and understood more, we would do more.”
I truly believe and endorse that lived experience partners throughout physical health and mental health services and social care are a vital necessity. Not only to add another dimension to strategy and policy making but to change cultures and contribute to life’s rich tapestry.